Precious moments with our baby boy

January 30, 2012

Precious moments with our baby boy

Yorkshire Post | January 26, 2012

Watching your baby die from an incurable condition must be the worst thing for any parent. Catherine Scott spoke to one mother who has done just that.

Lucas Hannigan was a perfect baby. Unlike his big brother James he was an easy going baby who slept well. He passed all his newborn health checks and soon his parents Jenny and Steve were able to take their new baby home to Bingley.

But at his eight-week check the GP was puzzled – Lucas was thriving but he was very weak – he called it Hypotonia – and also noticed that his Moro (or startle reflex) was absent, although it had been their when he was born.

The GP wasn’t overly worried but he wanted them to see a paediatrician as he had never seen this before.

The family was referred to a neuromuscular specialist at the Leeds General Infirmary (LGI) .Eventually after a DNA test, Lucus was diagnosed with Spinal Muscular Atrophy (SMA), but by then the family had already pretty much diagnosed the condition themselves.

“The hospital wouldn’t tell us anything, so I put Lucas’s symptoms into the internet and almost immediately came across the Jennifer’s Trust website and couldn’t believe what I was reading.

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Family rallies around 1-year-old boy with rare, incurable disease

January 26, 2012

Family rallies around 1-year-old boy with rare, incurable disease

Contra Costa Times | January 23, 2012 | By Theresa Harrington

When Danielle Terborg learned her 3-month-old son, Logan, had a rare illness called SMARD — spinal muscular atrophy with respiratory distress — she was faced with a difficult decision.

Doctors told her she could give him “comfort care” or hook him up to breathing and feeding tubes for the rest of his life, with the knowledge that he may not live until his second birthday.

“It was our family’s belief that it was best to do everything we can and give him the best life possible,” said Terborg, who brought Logan home from Children’s Hospital Oakland in September.

Before that, she and other family members spent hours by Logan’s side, playing with the blue-eyed, dimple-cheeked boy whose smile fills the room, even if he has a ventilator tube that keeps him alive. His grandmother, Peggy Thomas, and his mother alternate caring for him, along with in-home nurses. In the meantime, they have also researched his disease, finding one boy with it has lived to age 20.

Dr. Gregory Cox, a researcher at the Jackson Laboratory in Bar Harbor, Maine, is one of the few scientists in the world studying the disease and trying to find a cure.

It is so rare, he said, that statistics about how many children have it are not available, especially since so many victims die very young.

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Heroes In The Making: Luke Hennessy and Hayley Nilsen

January 23, 2012

Heroes In The Making: Luke Hennessy and Hayley Nilsen | January 17, 2012 | By Mark Remme

Six-year-old Luke Hennessy and 7-year-old Hayley Nilsen got the thrill of a lifetime Monday at Target Center. The two were the Timberwolves’ special guests during their game against the Kings, and Luke and Hayley got the opportunity to be recognized on the court, watch the game and be part of the Wolves’ family.

It was the Timberwolves’ way of honoring Luke, of Prior Lake, and Hayley, of Edina, for their courage and strength.

As part of WolvesCare Month presented by C.H. Robinson Worldwide, the FastBreak Foundation is focusing its attention on the Timberwolves’ toughest fans this month—children with life-threatening or long-term illnesses. Luke and Hayley were Monday’s “Heroes In The Making.”

Luke was diagnosed with Spinal Muscular Atrophy when he was 17 months old, and Hayley was diagnosed with a form of Muscular Distrophy called Charcot-Maire-Tooth when she was 5.

Timberwolves President Chris Wright and C.H. Robinson Worldwide Representative Maxim Rivkin presented them each with a jersey and an autographed team ball at center court during the third quarter.

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Mum strives for awareness of Spinal Muscular Atrophy

December 22, 2011

Mum strives for awareness of Spinal Muscular Atrophy | December 21, 2011 | By Laura McCardle

A mum whose baby daughter died shortly after she was diagnosed with a rare condition wants to raise awareness of it and its treatment.

Donna Bevan’s daughter Nicole was just four-and-a-half months old when she lost her battle with Spinal Muscular Atrophy (SMA) at Royal Berkshire Hospital (RBH) on Saturday, October 22.

Mrs Bevan, of Hunters Hill, Burghfield Common, believes that little Nicole was failed by the RBH and that she may have lived longer if things had been done differently.

Neurologists diagnosed Nicole with SMA on Friday, September 23, and Mrs Bevan felt her husband Nick and she were told very little about the condition except that their daughter “would have 12 months give or take”.

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4-year-old needs device to help her breathe

December 16, 2011

4-year-old needs device to help her breathe | December 11, 2011 | By Mark Hansel

Karah Barry’s mind is as sharp as any other 4-year-old’s.

She is bright and personable, reads, participates in a preschool program and plays on a miracle league baseball team.

Karah’s body, however, prevents her from participating in a lot of other activities common to girls of her age.

She has spinal muscular atrophy type 1, commonly referred to as SMA.

Karah cannot walk, talk, sit, or swallow and she is at high risk of acute respiratory failure. She relies on an automatic cough assist machine and a technique called CPT because she has no ability to clear secretions.

“She is a prisoner in her own body,” said Danielle Barry, Karah’s mother.

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Runners raise thousands for those who can’t

November 17, 2011

Santa Barbara News-Press | November 13, 2011 | By Nikki Grey

They say they run so that one day those who can’t, can.

Although it takes strength, endurance, and dedication to run a marathon, runners on Team GSF say their sweat leading up to the Santa Barbara International Marathon was nothing compared to what it takes to provide care for a baby that has spinal muscular atrophy.

Representing Santa Barbara-based The Gwendolyn Strong Foundation, 30 runners raised more than $50,000 to spread awareness about the disease, as well as fund research for a cure.

The nonprofit foundation, which was established in 2009 and has raised nearly $1 million for its cause, is not just any organization working to combat a fatal disease.

Created by two Santa Barbara parents who were devastated when they realized a disease they had never even heard of would likely kill their daughter, the organization has spread its message and influence nationwide.

Bill and Victoria Strong say they are humbled by the efforts of the 30 runners to raise money to combat the disease that afflicts 4-year-old Gwendolyn.

“I think this is so powerful that people who can walk or run use their bodies so someday children who can’t, can too,” said Mr. Strong, a 35-year-old Internet entrepreneur.

According to the foundation’s website, spinal muscular atrophy is the No. 1 genetic killer of babies and young children. SMA is a degenerative illness that eventually hinders an individual’s ability to walk, stand, breathe, eat, and swallow.

Mr. Strong said that because of this disease, his daughter is essentially paralyzed and requires around the clock care to stay alive.

The mind, however, is never affected, said Mr. Strong.

“She’s just like any other kid,” he said. “We just try to give Gwendolyn the experiences of any other child. Although the disease is still terminal, her life is now, so we just try to live it that way and give her as many experiences as possible.”

Mrs. Strong, 34, said giving Gwendolyn the life she and her husband want for their daughter can be challenging, but there are always ways to make it work. An example is when Gwendolyn wanted to climb a tree with her preschool classmates. She was lifted into the tree.

Gwendolyn communicates with others, Mrs. Strong said, using her eyes. For “yes,” she rolls her eyes up, and for “no,” she blinks. When Gwendolyn is really excited, she rolls her eyes very fast, Mrs. Strong said.

Members of Team GSF participated in the marathon, half marathon and relay. They raised money mostly by asking friends, families and businesses to sponsor them for the event.

The third annual Santa Barbara International Marathon was Mr. Strong’s first marathon. He said the inspiration of running a marathon to raise awareness and funding for SMA research stemmed from when his friend Michael Paskin raised money for the foundation by participating in the Ironman triathlon in 2009.

Mr. Paskin said he is inspired by the strength the Strong family demonstrates every day.

“What they’re going through is so incredibly difficult and over the course of (Gwendolyn) suffering from SMA, I think it’s easier for some people to throw in the cards or just cope with the diagnosis,” Mr. Paskin said.” But Bill and Victoria have dedicated themselves to eradicating this disease.

“In light of all these obstacles, they still remain so positive, so motivated, and so inspiring,” he said.

Lauren Lundy O’Connor traveled from New York City to run in the marathon. She became passionate about finding a cure for SMA when her best friend’s son died from the disease a few years ago.

Ms. O’Connor, a second-grade teacher, said she connected with the Strongs on Facebook, became good friends with the family and has raised more than $20,000 for the foundation.

She said she is motivated by Gwendolyn’s strength — at 4 years old, Gwendolyn has already doubled the average life expectancy of a child diagnosed with SMA type I.

“Gwendolyn may be 4 years old, but she is my hero, because she is so strong,” Ms. O’Connor said. “She won’t stop fighting. She fights every day. That little girl has my heart.”

The Strong family has changed her perception of life, she said.

“Bad days aren’t really bad days. Every minute is really a gift and there are no guarantees. The way they give Gwendolyn the world teaches me not to take things for granted and to really appreciate the little things.”

While cheering on her husband and the rest of Team GSF at the marathon Saturday, Mrs. Strong was moved to tears by her team.

“The funny thing is they all want to thank us, but they are making a difference,” she said. “It’s easy to just say, ‘I’m really sorry,’ or ‘Their situation stinks,’ but they’re going to help change it and that’s incredible.”

Mrs. Strong stood with Mr. Paskin’s wife and Ms. O’Connor’s mother on the sidelines holding signs for their loved ones that read, “Team GSF” or “Never Give Up.”

The Strongs say they aim to make running the marathon an annual event for the foundation.

They hope to bring in more runners next year, which their supporters say they will have no problem doing. It seems they all have inspired each other.

“It would take an unbelievable amount of endurance to give Gwendolyn the quality of life they have and I think the group of us understand there’s a similarity there,” Mr. Paskin said.

Ms. O’Connor agrees. She said the Strong family’s dedication keeps her running. “I plan to run as long as I’m alive or until there is a cure for the disease, whichever comes first,” she said.


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Thirty Santa Barbara Marathon Runners Raise Over $43,000 for the Gwendolyn Strong Foundation

November 5, 2011

Thirty Santa Barbara Marathon Runners Raise Over $43,000 for the Gwendolyn Strong Foundation

Press Release | November 4, 2011

Online PR News – 03-November-2011 –Thirty Santa Barbara Marathon runners from around the country collectively raised over $43,000 for the Gwendolyn Strong Foundation (GSF), a Santa Barbara-based nonprofit organization dedicated to increasing awareness of Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children, and accelerating research focused on a cure.

The thirty “Team GSF” runners will congregate in Santa Barbara to participate in the Santa Barbara International Marathon on November 12, 2011. Team members hail from California to New York and include GSF co-founder and father to Gwendolyn, Bill Strong, other SMA parents, families, and friends, and individuals moved by GSF’s efforts and the SMA cause. Beyond funding for SMA, Team GSF has also raised much needed awareness of SMA, its shocking statistics, its brutal progression, and its dire prognosis.

“To say we’re humbled by what the thirty inspiring Team GSF Santa Barbara Marathon runners have accomplished would be an enormous understatement,” said Bill Strong, GSF co-founder. “There is something unbelievably powerful about a group of individuals coming together to challenge and push their physical strength to the limits to help conquer a disease that robs children of theirs. We’ve all committed to running because we can and we’re running so one day those with SMA can too.”

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Lightning honor community heroes

November 5, 2011

Lightning honor community heroes

Fox 13 (Tampa) | October 25, 2011 | By Tanya Arja

Vodpod videos no longer available.

TAMPA – As a 16-year-old junior at King High School, nothing gets in Ben Carpenter’s way. Not his intense schedule of advanced placement classes in the International Baccalaureate program, and not the disease he lives with: spinal muscular atrophy

“It’s very easy to think I’m the only kid who can’t run, can’t walk, can’t play catch. But everything that’s ever gone on in my life, there’s always a positive to it,” he says.

Since middle school, Ben has helped others. He started a non-profit called Ben’s Mends, which takes old, tattered books, repairs them, and gives them to local groups.

His story caught the eye of the Lightning Foundation and their Community Heroes program. Each community hero gets $50,000 that they designate to a non profit.

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To fully live his life, young Matthew needs wheels

October 18, 2011

To fully live his life, young Matthew needs wheels

The Boston Globe | October 16, 2011 | By Beverly Beckham

H e wants to play hide and seek with his 5-year-old brother, Noah. He wants to see the birds he hears in the trees and the firetrucks that zoom past his house with their sirens on. But he has to wait for someone to carry him to the door to look outside. And birds and firetrucks don’t wait.

Matthew Davidopoulos of Lowell is a typical toddler in so many ways. He’s smart and talkative and curious and bursting to do all that he can. He loves to color and paint and play with his iPad and watch movies (“Cars’’ is his favorite). He has dark blond hair and perfect baby teeth and bright blue eyes.

It’s having spinal muscular atrophy that separates him from most kids his age. It’s being unable to sit or stand or walk or dress himself or even stamp his foot when he gets angry.

He was diagnosed with SMA when he was 8 months old, a week before Christmas. Doctors told his parents, Courtney and Paul, not only that Matthew had a degenerative muscle disease but that he would not live to be 2. They were given a Do Not Resuscitate form to fill out.

Matthew is 2 ½ now, and though his life is not easy, it’s his life. Every night his parents hook him up to a feeding tube to provide the nutrients he needs but cannot get by eating. Every morning they use a machine to clear congestion in his chest that accumulates overnight. Then they bathe and dress him and get him ready for the day. They carry him downstairs, where he has to wear a special vest for about 20 minutes to further loosen congestion. Then he is strapped into a “stander’’ for two to three hours of weight-bearing pressure on his legs. Three times a week, he has physical therapy, once a week he has play therapy and aqua therapy, and once a week he goes to a playgroup with typical kids.

All this, and he is a happy child.

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Life-changing diagnosis: West Haven parents appreciate every day as they work to raise awareness of daughter’s illness

October 3, 2011

Life-changing diagnosis: West Haven parents appreciate every day as they work to raise awareness of daughter’s illness

New Haven Register | October 1, 2011 | By Amanda Pinto

WEST HAVEN — Little Eva Grace Kelly is wearing a flowery white dress, a festive, pink hair bow atop her tiny, 8-month-old head. She gazes up as her mother tucks a Minnie Mouse doll under her arm, and breaks into a wide grin when her dad kisses her face.

It’s the kind of scene parents everywhere enjoy with their babies; the difference is the setting.

Eva is in the Pediatric Intensive Care Unit at Yale-New Haven Hospital. She’s been there for seven weeks, and her parents, West Haveners John and Melissa Kelly, don’t know when or if she will get to come home.

Eva has spinal muscular atrophy, a rare motor neuron disease that affects muscles used for crawling, walking and swallowing, and keeps Eva from being able to cough.

She has the most severe form, Melissa Kelly said, and babies with her diagnosis commonly don’t live past the age of 2. She was taken to the hospital to be fitted with a feeding tube, and then contracted an illness that led to a collapsed lung, which a breathing tube now keeps inflated, John Kelly said.

It is emotional to visit a wide-eyed baby afflicted with a “horrible” disease, so Melissa Kelly and her husband have decorated the room with brightly colored pictures, balloons and stuffed animals.

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